Introduction
Psychotic experiences are common among the general population. A recent systematic review and meta-analysis concluded that each year incidence of psychotic experiences is 2 of every 100 people (Staines et al. Reference Staines, Healy, Murphy, Byrne, Murphy, Kelleher, Cotter and Cannon2023). Many definitions of psychosis exist. For example, sensing things others cannot sense; having beliefs dissonant with consensus reality; feeling like thoughts, speech, and behaviour are muddled; having difficulty feeling emotions, experiencing pleasure, or articulating thoughts; and not having the desire to be social or the motivation to do the things one wants to do (American Psychiatric Association, 2022; McCarthy-Jones et al. Reference McCarthy-Jones, Marriott, Knowles, Rowse and Thompson2013; Cooke, Reference Cooke2017; Health Service Executive, 2019). However, the meaning of psychotic experiences is highly contested (Cooke & Kinderman, Reference Cooke and Kinderman2018; Ritunnano & Bortolotti, Reference Ritunnano and Bortolotti2022).
From the biomedical perspective, psychotic experiences can have meaning as symptoms of a psychiatric ‘disorder’ to be categorised according to psychiatric nosology (Kay et al. Reference Kay, Fiszbein and Opler1987); entities requiring epidemiology to determine their cause, course, and outcome (Dykxhoorn & Kirkbri, Reference Dykxhoorn, Kirkbride, ed., Bhui, Wong and Gilman2018); and loci for psychiatric interventions designed to stop them from happening (Harrow et al. Reference Harrow, Jobe and Faull2014). Critics of this standpoint argue that the biomedical perspective not only positions the person as a ‘passive object of care’ but also ignores and marginalises the primacy of meaning in lived experience. They contend that helping people live with, manage, and overcome mental health difficulties should (at its core) focus on what these experiences mean to the person having them (Thomas et al. Reference Thomas, Bracken and Timimi2012). For example, Holt & Tickle, (Reference Holt and Tickle2014) argue that if the process of recovery is to be promoted and service users’ distress alleviated, it is vital to understand the meaning individuals attribute to the experience of hearing voices. Autobiographical accounts (e.g., Chadwick, Reference Chadwick2007) and published empirical data (e.g., Murphy, Reference Murphy2000) also highlight how service users consider the meanings they ascribe to their own psychotic experiences to be fundamentally important in themselves and of personal significance (Beavan & Read, Reference Beavan and Read2010). However, within the mental health system psychosis can be seen as incomprehensible and sometimes meaningless (Fusar-Poli et al. Reference Fusar-Poli, Estradé, Stanghellini, Venables, Onwumere and Messas2022). Clinicians can be hesitant to explore meaning-making in the context of psychotic experiences for fear of triggering defensiveness, colluding in psychotic thinking, and damaging the therapeutic alliance (Zangrilli et al. Reference Zangrilli, Ducci, Bandinelli, Dooley, McCabe and Priebe2014; Ridenour & Garrett, Reference Ridenour and Garrett2023).
Ignoring lived experience meaning-making in service provision can cause harm through ‘hermeneutical injustice’ (i.e. when a person is unable to understand or express some significant aspect of their experience because of barriers to social interpretation). Examples of harm include not being able to fully understand one’s psychotic experiences because of a lack of meaning-making opportunities, never being comprehended completely by clinicians due to poor communication, and being deprived of a chance to better understand the self because the impact of psychosis on identity was not explored (Ritunnano, Reference Ritunnano2022). More in-depth idiographic research is needed to help unravel the complexity of psychosis, redress this historical neglect of lived experience perspectives, and help bridge the gap between what people want from services and what they provide.
One way that the act of meaning-making may affect recovery is by influencing the degree to which a person experiences Meaning in Life (MIL), which can be defined as the subjective, embodied, personal experience of establishing what makes one’s own life meaningful (Metz, Reference Metz2013). While some research suggests that the experience of psychosis impairs MIL (e.g., Yarnell, Reference Yarnell1971), other research suggests that finding meaning in psychotic experiences leads to enhanced MIL and the development of a coherent life narrative (Roberts, Reference Roberts1991). Previous qualitative research has found that MIL in psychosis recovery relates to awareness of connectedness to context (one’s relationships with the self, others, systems, the environment, and time) (O’Keeffe et al. Reference O’Keeffe, Keogh and Higgins2021).
For years now, MIL has been emerging to the forefront of empirical research into recovery processes and outcomes internationally (Slade et al. Reference Slade, Leamy, Bacon, Janosik, Le Boutillier, Williams and Bird2012). Supporting service users in the process of developing MIL is increasingly being considered a nascent marker of the effectiveness of mental health services (Glaw et al. Reference Glaw, Kable, Hazelton and Inder2017). While previous qualitative studies offer valuable insights into how meaning-making is experienced in psychosis (e.g., Liu et al. Reference Liu, Ma and Zhao2012; Bergström et al. Reference Bergström, Seikkula, Holma, Mäki, Köngäs-Saviaro and Alakare2019; Isham et al. Reference Isham, Griffith, Boylan, Hicks, Wilson, Byrne, Sheaves, Bentall and Freeman2021; Holt & Tickle, Reference Holt and Tickle2015), what remains unknown is how the meaning that is made in such efforts impacts MIL. To help develop adequate dynamic models of psychosis and its aftermath over an extended time frame, it is also helpful to explore meaning-making many years after first diagnosis.
To address these gaps in the literature, we aimed to answer the following research questions: how do people engage in meaning-making in their experience of a first-episode psychosis (FEP) and how does this meaning influence their current perspective on MIL 21 years after diagnosis.
Methodology
Design
This study is an Interpretative Phenomenological Analysis (IPA) guided by the ontological and epistemological underpinnings of critical realism and contextualism and informed by an integrated theoretical perspective of phenomenology, hermeneutics, and idiography. IPA is a qualitative methodology that enables the development of a deep and rich understanding of the nature and meaning of everyday lived experience by identifying, describing, and understanding participants’ experiential claims and key objects of concern (Smith et al. Reference Smith, Flowers and Larkin2009). Critical realism and IPA are distinct but complementary. For this study, we conducted a critical realist IPA that acknowledged personal meaning-making but also considered social influences (e.g. cultural narratives around mental illness) and structural influences (e.g. psychiatric classification systems shaping what counts as ‘real’) on how meaning is made.
The phenomenological aspect of IPA explores what is important to participants, how they are orientated in the world, and how they have understood a phenomenon. The hermeneutic aspect of IPA involves two levels of interpretation: participants are engaging in meaning-making about who they are and their experiences; then the researcher is trying to make meaning from participants’ meaning-making (Smith, Reference Smith2019). IPA enables a close, detailed, and in-depth idiographic examination of individuals’ experiences and meaning-making activities (Smith & Osborn, Reference Smith, Osborn and Smith2003). The overall outcome of an IPA study is ‘renewed insight into the “phenomenon at hand”; informed by the participant’s own relatedness to, and engagement with, that phenomenon’ (Larkin et al. Reference Larkin, Watts and Clifton2006, p.117).
Sampling and recruitment
Participants were recruited from a pool of individuals who had participated in a prospective 20-year follow-up study of a FEP epidemiologically complete incidence cohort (N = 171): the iHOPE-20 study (O’Keeffe et al. Reference O’Keeffe, Hannigan, Doyle, Kinsella, Sheridan, Kelly, Madigan, Lawlor and Clarke2019). This cohort was established when, at time of first contact (between February 1995 and February 1999), all referrals to a public/private mental health service in a Dublin catchment area were screened by a team of psychiatrists. Individuals were included in the cohort if they were aged ≥12 and diagnosed with a FEP using the SCID-IV (Structured clinical interview for DSM-IV axis I disorders) (First et al. Reference First, Spitzer, Gibbon and Williams1995).
Purposive sampling is used in IPA to generate an analysis about specific people who share a particular relationship to a certain phenomenon in a given context (Smith et al. Reference Smith, Flowers and Larkin2009). We employed purposive maximum variation sampling using iHOPE-20 data to recruit a sample balanced across remission status at 20 year follow up, age at time of FEP onset, and gender. Remission of positive and negative symptoms was defined by Andreasen et al. (Reference Andreasen, Carpenter, Kane, Lasser, Marder and Weinberger2005)’s criteria (excluding the 6-month duration component). All 80 iHOPE-20 participants were considered. We used a clinical gatekeeper to make initial contact with selected iHOPE-20 participants by phone. We discussed the study with those who agreed to hear more and, if agreeable, they signed a written consent form.
Data collection
The first author carried out semi-structured interviews to collect data one year after the iHOPE-20 quantitative follow-up (circa 21 years post FEP) in hotel rooms or the mental health service.
Interviews were audio recorded and guided by an interview protocol – developed through consultation with a person with experience of mental health difficulties and academic supervisors (see Table 1).
Table 1. Overview of interview protocol
A decision to stop interviewing was made after 16 interviews were completed following an appraisal of the richness of the dataset in its entirety in line with guidance of the originators of IPA (Larkin et al. Reference Larkin, Watts and Clifton2006). Data collection ceased when data were deemed to sufficiently illuminate participants’ meaning-making (their beliefs, understandings, reasoning, and interpreting) and enable the exploration of patterns of similarity and difference across the dataset. We performed an assessment of information power (study characteristics that impact dataset quality necessary to achieve objectives) to determine the dataset richness (Malterud et al. Reference Malterud, Siersma and Guassora2016). This assessment assumes that more participants are required if insufficient ‘research aim relevant’ information is available within a sample. Our study aim was narrow; sample: highly specific; interview dialogue: mostly strong; analysis strategy: cross-case; and use of established theory: moderate.
Data analysis
All interviews were transcribed, the accuracy of the transcriptions confirmed, personal identifiers deleted, and the dataset pseudonymised. Analysis was guided by IPA procedures (Larkin & Thompson, Reference Larkin, Thompson, Harper and Thompson2012; Kidd & Eatough, Reference Kidd and Eatough2017).
We used handwritten phenomenological coding (identifying participants’ objects of concern and experiential claims) and interpretative coding (querying, contemplating, and generating ideas about the meaning of these for participants). Codes were entered into Microsoft Word for analysis. This article presents the overarching superordinate themes generated by the study. These are higher order interpretations developed through the clustering of emergent themes (concepts, ideas, and statements that are a synergy of description and interpretation).
The analysis was performed over three phases. Phase 1: An idiographic analysis of each interview. We analysed each transcript separately. This involved grouping codes into clusters to generate a set of emergent themes specific to each participant. Phase 2: An analysis of data across the entire dataset. We developed emergent themes for the entire dataset by searching for relations, associations, and patterns, as well as conflict, tensions, and contradictions between participants’ accounts. We then formed superordinate themes for all data collected by considering abstraction, subsumption, polarisation, contextualisation, numeration, and function. We also created core concepts for each superordinate theme to assist their interpretation. Phase 3: Integration of analysis. We retained the richness, text, and texture of the individual experience and embedded this in more abstract theoretical claims to come to possibilities of understanding for the whole dataset. A reflexivity statement is provided in Appendix 1.
Quality assessment
We used Yardley (Reference Yardley2000)’s criteria of sensitivity to context; commitment and rigour; transparency and coherence; and impact and importance to address the issue of quality. The actions we took to meet these criteria are outlined in Table 2.
Table 2. Actions taken to meet Yardley’s quality criteria for qualitative research
Results
Profile of the sample
There were 16 participants in this study. All were Caucasian and most were male and unemployed. A high number were single. Schizophrenia was the most common baseline SCID-IV diagnosis. At the time of their FEP onset, their mean age was 26.94 years. When attending their semi-structured interview, their mean age was 47.68 years. Comprehensive demographic and clinical information are displayed in Table 3.
Table 3. Demographic characteristics and diagnoses of entire study sample
a Education level measured using the Irish National Framework of Qualifications. https://www.nfq-qqi.com/
b Participants in this category had not received education past the Junior Cycle of secondary education.
c Educational qualification awarded in the Republic of Ireland following successful completion of the Junior Cycle of secondary education and the achievement of a minimum standard.
d A vocation specific qualification that allows a person to start working in their chosen field or progress to Higher Education in the absence of a Leaving Certificate.
Overview of the findings
We found that psychotic experiences greatly influenced participants’ perspective on MIL 21 years after FEP diagnosis. Firstly, psychotic experiences eroded MIL as they threatened or damaged a person’s self, pre-psychosis/preferred identity, relationship with time, and control in their lives. Secondly, psychotic experiences also contributed to MIL. They allowed participants to fill a MIL vacuum by giving life value, significance, purpose, coherence, and connectedness. Thirdly, psychotic experiences created memory blanks that prevented the narration of certain time periods in life, blocking the process of meaning-making. In these circumstances, participants sought to move on and accept the likelihood that they would always have gaps in their life narrative. Consequently, they were deprived of the possible aspects of MIL connected to those lost time periods as well as MIL from narrative integrity.
This article focuses on the five superordinate themes and their associated core concepts generated in the analysis of the 16 interviews. These are: Living with the impact of psychosis on the self and identity (Survival); Reconnecting with time to move forward in time (Restoring temporality); Navigating agency and powerlessness in chaos (Reclaiming control); Generating Meaning in Life in a vacuum (Presence in absence); Trying to find a home for psychosis or not needing to (Narrative re- storying). The overarching structure of the themes is presented in Fig. 1. We now describe each superordinate theme, its core concept, an emergent theme example, and data in support of our interpretations. Additional interview extracts are presented in Appendix 1.
Figure 1. Diagrammatic representation of meaning-making in psychotic experiences, its superordinate themes, and their related core concepts.
Living with the impact of psychosis on the self and identity (Survival)
The first superordinate theme describes participants’ perception that the self and identity is under threat from psychotic experiences. They questioned if the self existed, if they knew or trusted the self, if the self was constant and stable, and if psychotic experiences were part of the self. To survive, participants had to continue to live despite (in some cases) the threat of psychotic experiences resulting in a sense of annihilation or alienation of the self and a loss of pre-psychosis or preferred identity. Meaning-making focused on ensuring the continued existence of the self and identity in the face of this threat. Thus, the core concept of Survival defines this superordinate theme.
An example of an emergent theme that illustrates this core concept is: Responding to the threat of self- annihilation. This describes participants’ experience of perceiving parts of the self as dead or the self as absent entirely. Self-annihilation was perceived by participants as a hollow feeling of uncertainty regarding their existence. To survive, participants made meaning in psychotic experiences by endeavouring to live with this threat.
For Adam, partial self-death was felt as deep regret at the extinguishing of the ‘fire in [his] belly’; something he attributed to his psychotic experiences. Adam equated this ‘fire in [his] belly’ with both his fervent determination for success (where he is ‘flying towards’ his life) and the wild abandon of youth (when he was exuberant, unable to stay still, and unwilling to be controlled). In the aftermath of psychosis, MIL no longer meant that he passionately pursued achievement. In the following extract, Adam describes how this loss meant grieving the integrity of his pre-psychosis self and accepting that he was no longer whole because of the hollow space carved into the self by psychosis:
Interviewer: What does having a fire in your belly mean to you?
Adam: Well it is only a term I use to explain it [part of the self], I always felt like… even when I was what 35… I always… like my chest would fill up with an energy or something, it is like youthful exuberance. When you are enthusiastic about things and you are flying towards things. That’s as it was. That is what it means to me, my meaning.
Interviewer: And how did experiencing psychosis impact on the fire in your belly, that youthful exuberance?
Adam: Extinguished it. The aftermath… because of my illness I had to go through years of depression after my psychosis.
Adam made meaning from partial self-death by focusing on his survival. Although he has accepted that ‘the fire’ was ‘extinguished’, he nonetheless persevered without it, finding determination elsewhere to survive.
Reconnecting with time to move forward in time (Restoring temporality)
The second superordinate theme describes participants’ perception of psychotic experiences altering temporality by blocking the fullness of lived time. Participants made meaning by trying to restore the temporality ruptured by psychotic experiences, which severed their relationship with time and removed their situatedness in time. Participants endeavoured to restore temporality by re-establishing this connection and situatedness. If temporality was restored, they could move forward in time. Thus, the core concept of Restoring Temporality defines this superordinate theme.
An example of an emergent theme that exemplifies this core concept is The view from rock bottom—life outside of time. This describes participants’ perceiving time as disintegrated due to the loss of MIL because of psychosis. Participants responded to the loss of MIL to psychosis by expressing sadness and anger at the injustice of their disconnectedness to time and the pain caused by this. They engaged in an ongoing struggle to cohere their life experiences across time and advance past psychosis. Participants understood their life as being situated outside of time. They longed to restore temporality by re-establishing their connection to time.
For Annie, the intensity of her psychosis derived belief system ruptured her connection to time. The all-encompassing significance of ‘being Jesus’ did not compensate for this rupture in temporality (i.e. the loss of past, present, and future). Annie experienced time as disintegrated and the world as alien. She viewed life through a window that could not be opened. This window separated her from the world and blocked the fullness of lived time. Psychotic experiences meant that Annie lived outside of time; unable to realise her dreams of working, enjoying life, and having a family. As a result, her perspective on MIL was fundamentally altered. Due to Annie’s psychotic experiences, she only partially lived her life. There was a limit on the degree of her engagement with the world. Time progressed without her. Consequently, she experienced certain aspects of MIL as forever out of her reach:
Annie: It is not nice being mentally ill and you are looking out your window and you see everybody working away, doing their job, going to the shops, bringing up their children. And you are stuck inside as I am in here as well, looking out and seeing this, and you can’t do anything about it. You can’t live like that.
Navigating agency and powerlessness in chaos (Reclaiming control)
The third superordinate theme describes participants’ struggle to exist in the disorder, confusion, and unpredictable environment caused by psychosis. Participants made meaning in psychotic experiences by embracing the powerlessness of, and engaging in efforts to reclaim control in, psychosis induced chaos. They endeavoured to recover the ability to influence life course and outcome. Thus, the core concept of Reclaiming control defines this superordinate theme.
An example of an emergent theme that instantiates this core concept is Perceiving personal responsibility as dependant on free will and agency. Psychosis was understood as influencing whether participants could be held responsible for their actions (depending on their ability to make choices and act). For some, psychotic experiences caused a relinquishing of responsibility for life. For others, they brought immense and overwhelming responsibility. This impacted the MIL attained from exercising free will and agency.
In her interview, Natasha described playing ‘game of let’s pretend’, knowing that her day-to-day actions were inconsequential; she believed they did not matter, impact, or alter the world. Therefore, she was accountable to no one. In the following extract, she asserts that trying to help others is pointless:
Natasha: [The world being a simulation] means you can’t help other people, and you want to help other people but then it is like well isn’t it better, if you actually care about other people instead of them having your own screwed up attempts to help them, that things are actually controlled. It’s like better and that kind of works out.
Natasha believed that the aliens she thought controlled human life were restricted in their power. They could not decide to inflict extreme pain on human beings. In the following extract, Natasha details how there was a safety net in place; within the computer simulation of the world that she believed in – there were ‘limits on pain’. These limits allowed Natasha to no longer struggle with the frustration of not being able to help others:
Natasha: Basically, picture a computer simulation run by aliens, so they have limits on pain, they have limits on how badly wrong things can go.
Interviewer: Who puts those limits in place?
Natasha: There just have been limits in my life, no matter how shit things have got, there is like loads of reasons like I wasn’t bullied in school and things like that, there are loads of things that never went wrong.
Generating meaning in life in a vacuum (Presence in absence)
The fourth superordinate theme describes participants’ perception that psychotic experiences were deeply meaningful; filling a vacuum in MIL that, in the past, was a source of anguish and distress. MIL could be produced or created by using psychotic experiences; they made participants whole and gave their lives value, significance, purpose, and connectedness. This feeling brought immense relief and reduced suffering and often gave rise to intense gratitude. Thus, the core concept of Presence in absence defines this superordinate theme.
An example of an emergent theme that demonstrates this core concept is Something in the void. This describes participants’ experience of perceiving certain aspects of MIL as absent in their lives. Participants made meaning in psychotic experiences by interpreting them as something that redressed the nothingness of this void.
The MIL vacuum felt by Thom when he reflected on his perceived ‘wasted’ life (from not being able to ‘achieve something’ of value in his lifetime) was a source of intense pain. He was devastated by not having utilised his untapped potential and achieved his definition of success, by making a contribution and demonstrating societal value. This was, in his view, a cause of depression. In his interview, Thom juxtaposed his perceived failure at not pursuing his yearning to work as a detective solving ‘disappearances’ (a MIL deficit) with his role as the ‘Solver’. The ‘Solver’ could predict the future and solve ‘certain things’. These were tests Thom set for himself to demonstrate his prescience. In the following extract, Thom gives an example:
Thom: I like predicting or figuring out what someone is going to say before they come in or figure out who is coming before I see them. For instance, … I was in the coffee shop and next minute somebody walks in the front door you see. No sound is mentioned at all. And I said immediately, I said: ‘Hello [peer]’. And she answered. And the chap who was in the room with me was amazed: ‘How did you know, can you mind read?’.
By positioning himself as the ‘Solver’ of impossible problems, Thom was able to demonstrate his own significance by accomplishing something of worth.
Trying to find a home for psychosis or not needing to (Narrative re-storying)
The fifth superordinate theme describes participants’ perception of psychosis diminishing their capacity to coherently narrate their lives, or at least, delaying the process until coherence could be reconstructed. Participants had to decide if they should try to understand psychotic experiences and position the experiences within a broad coherent life narrative: a process of ‘re-storying’. However, for some, psychosis entirely prevented the narration of certain time periods in their lives. The core concept of Narrative re-storying defines this superordinate theme.
An example of an emergent theme that represents this core concept is Navigating life in an incomprehensible mist. Participants understood psychosis as obscuring their understanding of themselves and their relationship with the world. The unfathomable nature of some psychotic experiences meant that participants struggled to decipher their obscured meaning. Participants eventually accepted that fully exploring and understanding psychotic experiences was impossible and that parts of their lives will remain incoherent and never be narrated.
Adam was unable to recollect what occurred during certain times when he was intensely experiencing psychosis. He had to accept these times as incomprehensible memory blanks. This acceptance was disconcerting and frightening as it meant that his ability to understand who he was and judge trustworthiness in others was compromised. Others could have harmed or tried to manipulate him during these periods, and he would not know. In the following extract, Adam discusses the impact this had on his relationship with his family member:
Adam: Now I will always love my [family member] no matter what she does. I don’t always trust her; I think she keeps more things from me and tells me lies sometimes but I am willing to forgive that because she is my [family member] and what she has done for me. But I haven’t got a complete handle on that situation. Because, well a factor would be that my memory isn’t great, so I don’t tend to reflect back too much on the relationship.
Discussion
Main findings
Study findings highlight the central role of meaning-making in psychotic experiences when finding, developing, and maintaining MIL. This suggests that people may face an additional obstacle in their recovery journey if psychosis is diminished or eradicated following treatment. This obstacle being identifying MIL from other sources that can replace the MIL derived from psychosis. Our data challenge reductionist narratives that simplistically frame psychotic experiences solely as sources of distress (Griffiths et al. Reference Griffiths, Mansell, Edge and Tai2019) or something that destroys aspects of a meaningful life (e.g. opportunities, relationships, freedom) (de Vries et al. Reference de Vries, Janse, Anbeek and Braam2025). Instead, findings reveal a complex interplay between suffering, resilience, and transformation. Consequently, mental health services should consider how epistemic injustice (the discrediting of people with experience of psychosis as knowers) and hermeneutic injustice (systemic lack of understanding limiting personal expression) may hamper recovery in psychosis (Kidd et al. Reference Kidd, Spencer and Carel2025; Ritunnano, Reference Ritunnano2022). Participants who were continuing to experience psychosis years after initial FEP diagnosis were not prevented from achieving lives of personal meaning, despite the persistent struggle to stop psychosis from eroding aspects of MIL. This finding contributes to the evidence base supporting optimism for personally defined recovery: a core tenet of the recovery approach (O’Keeffe et al. Reference O’Keeffe, Sheridan, Kelly, Doyle, Madigan, Lawlor and Clarke2018).
Current meaning-making theory focuses on orienting systems that provide cognitive frameworks used to interpret experiences (e.g., constructs, world assumptions, life narratives, goals, beliefs, and schemas). It asserts that when people assign meaning to an event that is discrepant with their orienting systems, they either attempt to change or distort their views of events to incorporate them (i.e., assimilation) or alter their orienting systems to integrate that situation (i.e., accommodation) (Park, Reference Park2010; Neimeyer, Reference Neimeyer2001; Gillies et al. Reference Gillies, Neimeyer and Milman2014). Our findings challenge this theory. For some participants, in the process of meaning-making in psychotic experiences, orienting systems were destroyed. The self was perceived as absent. Life narrative, as a whole, was experienced as disintegrated. Situational meaning was impossible to assign to psychotic experiences as they were not in a person’s memory. As a result, alignment between orienting systems and situational meaning could not take place. However, these participants could still experience MIL (e.g., through the act of surviving self-absence). Thus, our data indicate that MIL differs from an orienting system and that current meaning-making theory may not be fully applicable to the lives of people experiencing psychosis.
Within psychiatry and mental health services, psychotic experiences are traditionally framed as symptoms of illness that require interventions, primarily through prescribed medications that have ‘antipsychotic’ effects. While this approach is not without merit, our findings challenge practitioners to move beyond this interpretation and embrace the multiple, complex, and idiosyncratic explanatory models used by people to understand, and make peace with, having experienced psychosis. By attending to service user meaning-making, clinicians can aim to minimise the damage caused by psychosis while supporting people to engage with, and use, the explanatory models and coping mechanisms most helpful to them. It also involves challenging the impetus to deem anyone who does not interpret psychosis through the medical lens as ‘lacking insight’. Adopting a recovery orientation requires clinician openness to considering multiple experience interpretations and setting ‘expert’ knowledge alongside (not over and above) service users’ own explanations. People feeling unsafe, frequently experiencing seclusion, encountering stigmatising clinicians, and receiving treatment limited to stabilisation and medication are deficits in the mental health system that hamper meaning-making and need to be addressed to safeguard the recovery approach in services (van Sambeek et al. Reference van Sambeek, Franssen, van Geelen and Scheepers2023). Doing so will help mental health services better support the search for meaning, belonging, and coherence in recovery (Ritunnano et al. Reference Ritunnano, Kleinman, Whyte Oshodi, Michail, Nelson, Humpston and Broome2022).
Trauma informed care (TIC) emphasises reducing the risk of re-traumatisation within the mental health system and views trauma as the genesis of mental health difficulties (Isobel & Delgado, Reference Isobel and Delgado2018). While we do not dispute this perspective, our participants also described psychotic experiences as trauma. They viewed them as an event or series of events that were threatening or damaging to the self, their pre- psychosis/preferred identity, and temporality; as well as their ability to control their lives and effect change in their environment. These events caused overwhelming stress that exceeded participants’ ability to cope; thus, they saw them as a threat to their psychological integrity. Integrating this knowledge into TIC involves being aware that people may be entering the mental health system as shattered forms of their former selves who have lost connection to themselves, to others, and to time. Therefore, service users need to be offered a physically and emotionally safe, caring, and respectful environment to be supported in re-forming the self and re-establishing these connections. Thus, TIC involves being sensitive to the fact that trauma is not just a precipitating factor for psychosis but is within the experience of psychosis. This understanding corresponds with a recent systematic review and meta-analysis that concluded a person’s FEP is often a highly traumatic experience (Rodrigues & Anderson, Reference Rodrigues and Anderson2017). Our findings nuance this knowledge: indicating that the trauma of psychosis erodes MIL. Therapeutic engagement with trauma induced pain, caused by psychosis, in service provision may help enhance MIL and assist people to progress in recovery.
Implications
We found that while psychosis erodes MIL, it also contributes to MIL. This means that in some cases, service providers are inadvertently diminishing MIL by reducing psychotic experiences within service users’ lives or by removing them entirely. For example, if Thom’s psychosis derived belief of himself as the ‘Solver’ was eradicated by treatment, he would be deprived of a path to life significance. We recommend providers consider delivering interventions to help people replace psychotic experiences with sources of MIL that are less costly to their psychological wellbeing. We suggest that the core concepts identified be integrated into conversations with people using services.
Strengths and limitations
We sampled from a FEP epidemiological cohort, established prior to early intervention services in the study’s catchment, and followed up with its participants at one specific time point. Consequently, we generated knowledge that may be transferable to the broad psychosis spectrum, people availing of standard mental health care for psychosis, and people with a similar number of years post FEP. Additionally, the data we obtained from ageing service users can support mental health services in developing models of healthcare provision for older adults with experience of psychosis. IPA allowed us to privilege depth over breadth to get ‘experience-near’ (Eatough & Smith, Reference Eatough, Smith, ed. and Stainton-Rogers2017) and we captured a range of meaning-making efforts at different time points.
This study has several limitations. Participants were mostly male, unemployed, and single; the majority had a diagnosis of schizophrenia; and all were Caucasian. The study was conducted in the Republic of Ireland; thus, findings do not illuminate how psychosis is understood in other countries or cultures. These factors impact transferability. While not minimising participants’ accounts, narration of their meaning-making may have been influenced by fluctuations in psychosis symptoms and antipsychotic medication use (Barch & Sheffield, Reference Barch and Sheffield2014). Articulate and open participants may have had a disproportionate impact on study findings. Also, restricting public and patient involvement to interview guide development may have limited the study’s relevance, usefulness, and impact.
Future directions
Future studies should explore how different types of psychotic experiences impact MIL in similar or distinct ways. Our data indicate there are aspects of MIL uniquely perceived by people with experience of psychosis (e.g., Presence in absence). Therefore, we recommend that future research should develop a MIL questionnaire specifically for this group. Finally, qualitative longitudinal studies should be carried out to explore whether meaning-making in psychotic experiences changes over time.
Supplementary material
Supplementary material for this article can be found at https://doi.org/10.1017/ipm.2025.22.
Acknowledgements
We would like to thank Barry Hurley of the Irish Advocacy Network for advising on the content of our interview protocol.
Author contribution
All authors meet the International Committee of Medical Journal Editors’ criteria for authorship. DOK wrote the first draft of this manuscript. All authors critically edited and revised the work and agree to be accountable for all aspects of the study. All authors conceived of and designed the study; collected, analysed, and interpreted the data; and contributed to data analysis. AH and BK provided academic supervision for research activity planning and execution.
Financial support
This study was funded by the Trinity College Dublin Postgraduate Research (1252) studentship.
Competing interests
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Ethical standard
Ethical approval was sought from, and granted by, the St. John of God and Trinity College Dublin Research Ethics Committees. Consequently, this study has been conducted in accordance with the ethical standards laid down in the Declaration of Helsinki and its later amendments. We developed a protocol to manage distress if encountered during data collection. No such distress was communicated during the interviews.
Open access
